Surviving the Initial Autism Diagnosis
(an open letter to new parents)
I have shared my own story of encountering the initial autism diagnosis, and I have also shared my own reactions with it- both in grief and in guilt. Autism has changed my life. It’s meant sacrifice, it was (I feel) one of the causes (though NOT the sole cause) of my divorce. But I wouldn’t change this for anything. Yes- there are still ups and downs, but we take the bad with the good and celebrate the victories as they come. Because there are good things. Life doesn’t end when you find out your child has autism and while you may not see the light at the end of the tunnel (yet), believe me it’s still there.
If you’ve recently received a diagnosis of autism (or something similar), this is not something I wish to congratulate you on. If you’re in the United States then yes, your child is now 1 of 68 (as of 2014) that are diagnosed with autism. But please, don’t despair. Yes, allow yourself the time to grieve because it is natural. Allow yourself to cry and be angry with whomever you need to be angry with. Allow yourself to feel because if you don’t deal with those feelings now, dealing with the diagnosis could be a much longer journey than it needs to be.
This journey is one that I began in 2003. And there have been many ups and many downs, quite a few times that I started to wonder if I could do this anymore. And I wish, at the time, that someone had told me or at least given me some similar advice:
- You will learn new languages (both related to Autism and related to the special education process)
- You will learn to become an advocate for your child
- You will learn to put everything in perspective
- You will learn the depths of your patience and your strength
- You will learn to negotiate
- You will learn to celebrate the simplest things
And there’s so much more that you will learn.
Everyone’s journey is different but there might be similarities along the way. And if your child has gotten their diagnosis early in life, consider that a good thing. Start looking into early intervention programs right away.
Diagnosed later on? You’re still in good shape. Seek out community leaders, special needs parenting organizations, and organizations that serve the special needs community. Depending on where you live, there might be a few specialized organizations or groups specifically for autism. Reach out to your community and develop your support network.
And while my journey may not be similar to your journey- I was once there. I remember my heart sinking quickly into my stomach as the developmental pediatrician confirmed my fear. I remember trying to maintain my composure for the remainder of the appointment. And I remember crying myself to sleep once we got home. You may deal with this differently, and that’s also normal. We all handle things in our own way.
Do what you need to do to deal with the initial autism diagnosis.
Dos and Don’ts of Dealing with the Initial Autism Diagnosis
From my perspective and experience:
- Allow yourself time to grieve- yes, you still have your child but the future for your child is uncertain. It’s OKAY and normal to grieve this.
- Build up a support network. This could be in addition to your existing support network or outside of it and specific to autism.
- Tell your family and friends on your own time. Don’t feel pressured to tell everyone that you know until you’re ready.
- Begin researching and reading. We all have our own recommendations as far as books are concerned, and I’m no exception. Here’s my personal list of recommendations for top ten books for new parents.
- Wallow in guilt. Yes- this will come too. Sometimes I still deal with it but if you allow yourself to wallow in guilt, it’s not helping anyone.
- Be ashamed. Your child is still your child- just that now they have a new word for defining some of their quirks.
- Give up hope. In spite of how long some of the nights might be or how many bumps you may hit, it will get better. It may not seem like it immediately and sometimes you might have to examine things in a new way to see the positive but it is there.
Receiving the initial autism diagnosis can be heartbreaking, devastating, and mind blowing. But you are not alone. You are now part of the bigger tribe- the ausome family. Remember what I said about building your support network? Consider me a part of that. Feel free to reach out to me via e-mail: firstname.lastname@example.org or connect with me on Twitter. Search Facebook for support groups because there are a ton of them out there. Both national and local.
Autism is not a walk in the park. Autism can be downright ugly, but autism can also be beautiful and inspiring. Autism may just take over your life at first, but it doesn’t have to be everything that your life entails. Yes, part of my world does revolve around autism because it is part of my life. But it’s not everything and it’s certainly not everything that my daughter is.
Don’t give up hope because it will get better. You may not always think it will get better, and sometime you may have to squint a little to see the good. But it’s there.
This journey will not always be easy, but you already love your guide.